At a Medication Crossroads

It took us YEARS to cross the medication threshold with Ryan. Both Veronica and I felt that as long as he could attend in school, we did not want to medicate. A little over a year ago, we saw a child that was coming off a very difficult school year, one in which his teacher reminded us often how his impulsivity was getting in the way of his schoolwork. We also saw a child that was not happy. He avoided spending time with the family, preferring at every turn to escape to his room with the door shut and the shades drawn, only to engage in repetitive, compulsive activities — typing and immediately deleting hundreds of NHL standings files — which only made him angry and which he admitted he did not even enjoy.

We sought more help, first with a child psychologist. He thought medication might benefit Ryan, but did not push us on the decision. Still, that was enough to consult a psychiatrist, who had a similar opinion. He too was not pushy at all. He said he believed in a “low and slow” approach that Veronica and I appreciated.

We crossed the threshold. We needed to see if medication could truly benefit Ryan. Would he be happier? Would it make it easier for him to attend in school, thereby reducing his anxiety? We talked to him openly about why we were giving him medication. He surprised us by quickly learning to swallow even large pills.

It was with very mixed feelings that we dropped that first prescription off at the pharmacy. Our feelings weren’t so mixed when the first med turned Ryan, never an easy sleeper, into an insomniac. We stuck it out for a couple weeks, consulting often with the doctor, before we mutually agreed we needed to try something else.

The next med had the opposite of the intended effect on Ryan. It appeared to make him more active and less focused. His teachers and aides agreed it was a step backwards. Before we tried a third med, Veronica and I agreed that number three would be the last. If it didn’t work out, we’d decide that we had given it a fair try, but that meds just weren’t for Ryan.

Ryan tolerated the third medication quickly. It did not appear to affect his sleep, and after a few weeks, his teachers and doctors all felt it was helping him. So we continued to slowly step up the dose. He’s doing well in school. Everyone reports he is focused and attentive. Anxiety is still an issue, but he also appears happier.

And yet … today we are on the verge of stopping the med.

Ryan weighs less than he did a year ago. Loss of appetite is a common side effect of this particular drug. We are carefully monitoring his weight with doctors and he remains in a healthy range, but still, it’s a concern. Most days, he eats nothing between breakfast and his return from school, when we force him to eat a snack. We tried weight-gain protein shakes, but struck out, so the current regiment calls for a vanilla ice cream shake after school (on the advice of doctors!). A least Ryan is happy about that part.

The other issue, of greater concern, is facial tics. Ryan has always had repetitive behaviors. We have consulted with behavioral specialists, both through the school system and privately, to address a number that have gotten in the way of his ability to perform at school: throat noises, hair twirling, chewing and the most problematic of all — a refusal to swallow saliva that left him blotting his mouth on his shirts and forced us to send him to school with a change of clothes every day. So we don’t believe medication is the lone cause of the behaviors he now displays, but aggravation of tic-like behaviors is another known side effect. Ryan repeatedly moves his jaw, as if trying to pop his ears, and sniffles loudly. The frequency is not consistent, but at its peak it is almost constant and he seems powerless to stop it.

To see these facial expressions and hear the noises pains me. We know it is behavior that can leave him ostracized. To think we are giving him a drug that might be causing the issue is not pleasant. We discussed the tics with the psychiatrist, but to this point felt the benefits outweighed the costs.

Today, we’re not so sure.

An email went to the psychiatrist last night. We intend to take Ryan off the med this weekend to see if we notice a difference in the tics, his appetite, and his sleep (getting him to bed, normally not a problem, has also become an issue of late). This drug does not require weaning and does not remain in his system more than about 10 hours, so we should be able to make a fair judgement. We will weigh the doctor’s opinion, of course, but the final decision will be ours. If the problematic behaviors lessen or disappear without the med, the next step will be to see how he performs in school without it.

This is not the only choice we face. If we opt to stop this medication, will we try another? I don’t know the answer. A year ago we would have said absolutely not and I still lean that way. There are no easy answers. We want to do everything we can to make Ryan’s life easier and help him navigate the challenges he faces. It took a long time for us to turn to medication as a part of that support plan. It was never a decision we felt great about.

If there is something that can help him without all kinds of side effects that outweigh the benefit, of course we will investigate. We’re just not sure, after three different drugs and a year of trying, that such a medication exists.

And so we are right back to the crossroads we faced a year ago. To medicate, or not?

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9 thoughts on “At a Medication Crossroads”

These decisions are so hard. I certainly am in no position to offer advice. I am in a position though to wish you well and to send you positive thoughts and to pray for you … so that is what I am doing.

It would be nice if the answers were clear-cut. I am neither pro-meds nor anti-meds. But if the tics disappear while off the med, and his behavior doesn’t deteriorate, I think we might be done with them for now.

My daughter is now 19. When she was about 9, I began the meds journey. I fought meds for as long as could. But her anxiety got to the point she could barely function and the list of her fears was growing daily. I began meds the week she developed a fear of kittens. She also had attention problems, sleep issues, and tics, and a sore picking issue. It took years to find the right combination of meds to stabilize her. None of the ADD drugs ever worked for her. But without the other meds, she would never have graduated. The process is a journey. You have to evaluate if the benefits outweigh the side effects, because there is almost always side effects. But if you can find the right med or meds, it may make such a difference in the quality of your child’s life. And no, I am not just a pill pusher. If my daughter could have been “cured” through therapy and diet I would have been all for that. But 9 years of that stuff was going nowhere. Also getting a second opinion from a new psychiatrist might help. Bottom line, for some kids the meds make all the difference in the world. And others, shouldn’t be on them. And we parents, most of us, without a medical degree, have to make that very difficult decision. Good luck and God bless.

Thank you for the thoughtful comment. As I said above, I am not pro- or anti- medication and I recognize it can be very effective. Maybe we haven’t found the right drug or the right dose. We will continue to consult with doctors and observe Ryan closely to guide our decision.

Married father of two, rapidly approaching middle age. Hockey has been a constant in my life since the age of four. I care way too much about most sports -- something that will become evident in these pages -- but I'm learning that some things are more important. My son has been diagnosed with PDD-NOS, ADHD and Asperger's at various points.